In a state with just two pediatric rheumatologists, help for rural kids and their families

July 09, 2014

By
April Blackmon

Carol Lindsley, M.D.., with patient Ashlynn Cramer

At first, 4-year-old Ashlynn Cramer grew increasingly tired, sleeping through kinder-prep school and after school activities. It was January 2010, and neither her parents nor her local physicians could pinpoint exactly what was wrong. By mid-February, Ashlynn could hardly walk or even move.

Ashlynn was referred to the University of Kansas Medical Center's expert on pediatric rheumatology, Carol Lindsley, M.D., in early March, and the Cramer family drove some 400 miles to the medical center from their home in Scott City, Kan. After a few tests, Lindsley diagnosed Ashlynn with juvenile dermatomyostitis (JDM). JDM is a rare autoimmune inflammatory disease of the muscle, skin and blood vessels that strikes most children between the ages of 5-10 years and affects approximately three in 1 million children each year. Its cause is unknown; it has no cure and requires years of ongoing specialized treatment.

Thankfully, Ashlynn and the hundreds of other rural Kansas children with various rheumatic diseases don't always have to travel to Kansas City. Fortunately for a state with just two pediatric rheumatologists, Lindsley runs outreach clinics across Kansas, bringing the necessary specialized follow-up care to underserved areas like Hays, Kan.

"We really appreciate the clinics and being able to see Dr. Lindsley four times a year in Hays," says Ashlynn's mother, Karon Cramer. "We're in rural Kansas; a lot of people have to go out-of-state to see a (specialist)."

The Cramer family, who now lives in WaKeeney, drives about 40 miles to Hays for the outreach clinic. Regular checkups, along with medications, have helped Ashlynn, now 9, walk, run, play and enjoy her childhood, Karon says. And when Ashlynn had a relapse a few years ago, Lindsley's Wichita outreach clinic was scheduled for that week. Ashlynn was able to get an appointment, and quickly got her JDM back under control.

"Wichita is just three-and-a-half hours away, so we were so grateful Dr. Lindsley opened her schedule up and let us come in and get things under control faster," Karon says. "If you wait too long with this disease, it can go downhill very fast."

Bringing specialized care to rural Kansas

KU Medical Center's outreach clinics have been a vital resource for thousands of rural Kansas children with rheumatic diseases for more than 30 years, providing them the specialized care needed to keep their conditions — everything from juvenile rheumatoid arthritis to rare diseases like JDM — under control.

Lindsley started the outreach clinics in 1983 with the help of a federal public health grant aimed at supporting areas with children with special needs in regions with limited resources.

"There were a lot of kids in wheelchairs and who had joint deformity before we started the outreach clinics," Lindsley says. "The discipline of pediatric rheumatology was unfamiliar in this part of the country and many children had delays in diagnoses. At KU, I would see children who had the disease for a long time before they were referred in and evaluated.

"I thought if we could get out and evaluate them earlier and get them started on treatment, then that would be more effective as far as achieving good clinical outcomes," she says.

As the only pediatric rheumatologist between Denver and St. Louis in the 1980s, Lindsley spread the outreach clinics — out west in Garden City and Hays, south-central in Hutchinson, and southeast in Pittsburg — to cover as much of the region as possible.

The program's ongoing success is possible in large part because of the university's investment in an airplane, which allows the team to reach most clinics and provide services in one day.

Another key to success has been the hard work and dedication of past and present support staff, including Judy Morris, RN, and Ann Kunkel, coordinator. The two have worked with Lindsley for more than 20 years improving the health of children in Kansas, Missouri and Oklahoma.

Lindsley has watched her efforts grow from treating a handful of patients in the mid-1980s to hundreds of patients in recent years, which she credits to increases in local, regional and national publicity and awareness of pediatric rheumatic diseases. To accommodate the ever-increasing patient load, the team eventually added clinics in Topeka and Wichita.

"The clinics have grown every year to the point that we have patients from all over the state, almost every county," Lindsley says. "Some of my largest clinics now were not part of the first effort — Topeka is a fairly large clinic, and there's a very large clinic in Wichita."

Depending on the location, the outreach clinics are run out of either local pediatricians' offices, hospital outpatient clinical areas or KU Area Health Education Centers. The clinics are held at each location anywhere from two to six times a year.

"Children with rheumatic diseases need regular check-ups, at least two to three times a year," Kunkel says. "It is not uncommon to see patients for most of their childhood."

Sedonah Schad, 10, is one of many patients who will grow up seeing Lindsley regularly. Like Ashlynn, Sedonah also was diagnosed with JDM. She was just five years old at the time, and her symptoms were so severe that it took nearly a year of intense treatment before she could just sit up on her own again.

In severe cases like Sedonah's, patients are seen in Kansas City until their conditions become stable.

"We go to individual outreach clinics about every two to three months; if a patient requires closer monitoring and care because of the severity of their disease and/or possible need for hospitalization for certain therapy, it's done at KU," Morris says.

Sedonah and her mother, Sheila Nather, made the 560-mile round trip from Timken every two weeks for nearly two months until she regained a fair amount of strength.

"I don't know if you could really keep doing the trip to Kansas City; that's a long trip from here," Nather says. "And I don't know how people out farther west from us do it on a regular basis. I don't think people would be able to get as much care as needed if there were no outreach clinics."

Regular care at the Hays outreach clinic has helped Sedonah fully regain and maintain her strength, energy and health.

"I used to (have pain) ... but not anymore," Sedonah says.

"For a while she couldn't run; she couldn't play. She didn't do all the other things the other kids did, which was hard on a kindergartner at that time," Nather says. "Now she does everything everyone else does."

The ongoing care and earlier diagnoses, as well as care closer to their homes, have helped not only Sedonah and Ashlynn, but hundreds of the region's young patients as well.

"Last year the six locations of the KU pediatric rheumatology outreach clinics provided more than 500 children with convenient access to specialized care," Lindsley says, "resulting in earlier diagnosis and better coordinated ongoing care near their own communities."